Host Defense, Lion's Mane Capsules

[mpagganwala]

There is discussion going on about Lions Mane supplements in other groups (Facebook: NAF) where people have seen some significant benefits with their SCA. All different kinds of sca’s. I thought that I would give it a shot and see if anything comes of it. I have seen some improvements with speech and throat muscles

amazon.com/dp/B00OVF9DVM/re...

[HarryB Administrator]

Hi mpagganwala

I am pleased these have been beneficial for you.

However I must stress there is no robust scientific evidence supporting the use of these capsules in people with ataxia. Also if anyone is thinking of taking any supplements or homeopathic/alternative medicine, please discuss this with your doctor first to ensure no interaction with anything you are already taking.

Best wishes

Harriet

[mpagganwala in reply to HarryB]

If I waited for a clinical trial/scientific evidence for everything related to ataxia to see if it works, I will be dead by then.

This is a well known vitamin and hundreds are taking it and if you want your evidence, you read their responses on National Ataxia Foundation group on Facebook. You will find testimony of tens of people including mine with different types of ataxias mentioning that this medication/supplement is helping them in some shape.

Upside = It helps with a debilitating disease

Downside = I loose 15 bucks for ordering

Also knowing there is little commercial benefit from this, I doubt if it will ever make it to a clinical trial phase. Because At the end of day, it’s all about the greens$$$ for big Pharma.

I am sharing my experience and hoping that it hopefully ends up helping someone but you can disregard it and wait for scientific evidence.

[Stanleyclan in reply to mpagganwala]

It sometimes feels people don't want a cure? I actually stopped looking on here once (Joe) Sunvox was banned....he was the only one who seemed to be actively trying to find some way of helping those with this awful disease. Your post notification caught my eye though .... I will look into the supplement. Good luck....as you say...no time to wait!

[CardiCorgi in reply to Stanleyclan]

You might be interested to know that he keeps updates on another website and he just posted his 5th year update with no progression. Very interesting. Seems his latest insight is creatine. I wonder if he's heard about Lions Mane?

longecity.org/forum/topic/1...

[Stanleyclan in reply to CardiCorgi]

Thank you for sharing! I'm sure the answer is out there and a lot closer than most appear to be looking.

[AutumnSwan in reply to CardiCorgi]

Dear Cardi,I’m completely unaware of the going ons about Joe Sunvox so please educate me. I’ve seemed to progress rapidly in the last few years. Can u please tell me what website I can find him on? Thank you.

Autumn Swan

[Stanleyclan in reply to AutumnSwan]

Follow the link at the end of Cardi's comment to me. Joe does so much research into supplements that may stop, or at least slow, Ataxia's progression. I put my husband on some of his suggestions a couple of years ago. Clearly I don't know what his progression would of been but, so far, he is doing ok.

[CardiCorgi in reply to AutumnSwan]

Hi Autumn,

I am so sorry to hear about your progression. Ataxia is a terrible disease no matter which type you have. Joe/Sunvox was banned for a horrible and mean PM he sent to another member, but I continue to follow his information because he does a lot of interesting research. Unfortunately, nothing he has done or is doing has been proven in a proper medical trial to be safe or effective so one must be careful when reading what he is doing. He has SCA1 which is one of the types of ataxia with a known cause.

You can read his old posts on here through this link:

healthunlocked.com/user/sunvox

and you can read his latest thoughts by clicking this link and scrolling down:

longecity.org/forum/topic/1...

Although, one item he often wrote about, namely trehalose, had an actual clinical trial for SCA3 patients and is in a second clinical trial now so perhaps his ideas will have some real medical backing in the future:

Oral trehalose maybe helpful for patients with spinocerebellar ataxia 3 and should be better evaluated- prd-journal.com/article/S13...

Efficacy Of Oral Trehalose In Spinocerebellar Ataxia 3 - clinicaltrials.gov/ct2/show...

[Namitaytrev in reply to CardiCorgi]

Can you share the “other” website he is on?

[CardiCorgi in reply to Namitaytrev]

Hi Nami - The link is in the post above; just click on it and it will take you there

[SueMillman Partner Ataxia UK in reply to Stanleyclan]

At Ataxia UK we completely understand how desperate people can be for treatments and cures for ataxia, and that this leads some people to experiment with unproven treatments and share their experiences. For our part, as a charity to whom people in a variety of situations and progression turn to for advice, we must make sure we provide full information,and warnings where unproven substances are being recommended, to enable people to properly evaluate what they wish to do. It is my view that it would be irresponsible to do anything else. Sue

[Cupcake12345 in reply to HarryB]

I will look into this supplement, I agree anything is worth a risk and I would be dead if I waited for clinical trials!

[mpagganwala]

A good read.

Also please share your experience if you end up trying so others can benefits from the experience. I will post my thoughts at the end of next week to let you know how taking the supplements went.

healthline.com/nutrition/li...

[Terrier56 in reply to mpagganwala]

Hi there. I have been in ataxia groups on FB for many years including as an admin.

I am cautious, not at all gullible and actually quite wary about some claims I have seen. However I am ordering several months supply of lions mane powder and will see what if any benefits I get from it

I was DX fifteen years ago with SCA6 and have balance and brain fog issues.

Once I've tried the stuff I'll feel more personally informed when i see posts about it in the ataxia groups

[Alex000 in reply to Terrier56]

Hi! Did you see any improvements with Lion's mane?

[ww-wibblywobbly]

Hi, I take AHCC, active hexose correlated compound, which is a supplement comprising of various mushrooms, mainly shitake.

I take this because 6 years ago I had breast cancer and it has been proven in clinical trials to reduce the reoccurrence of cancer. It boosts the immune system greatly. I take 600mg per day and if I feel I'm getting a cold or something then I double it to 1200mg organise a few days. Except for migraines, which are ataxia related, I'm very rarely I'll with anything else.

It definitely makes me feel better as it seems to reduce my tiredness. However I still have a 2 hour rest/sleep in bed every afternoon. So I think the brain fog etc is reduced because the tiredness is reduced. Despite this my ataxia has slowly been progressing during the last two years. Before that I probably had a run of about 4 years with no real progression.

Tbh I never really thought about the supplement in relation to my ataxia! I did check with my gp before taking it though.

As long as you check with your Dr first then I see no harm in taking supplements if they make you feel better.

XX